28th Oct2011

Christmas

by Dutchcloggie

Christmas…Christmas…Christmas.

That dreaded time of year for everyone who has lost a loved one. So, before I do anything else, let’s have a listen to Australian Tim Minchin’s White Wine in the Sun. It is a beautiful song that, apart from the bit about his daughter, sums up how I feel about the whole thing. Or rather, how I used to feel about it.


The first Christmas without Jane.

Of course my family invited me, or perhaps even assumed, to spend Christmas with them. My parents and my sister and her family. And for some reason that I could not understand, I really realy did not want that. In fact, I could think of nothing worse.

But why? Not because of the company. I love being with my family. They are caring, lovely and have been wonderful throughout all this. And they loved Jane. So what could be better than spending Christmas with people who love me, care for me and know how much I loved Jane. If I cry, they will cry with me. If I laugh, they will understand that joy is likely to be short lived.

And yet…

It took me a couple of weeks to understand the problem. And even then, I might not be able to fully explain it.

Jane did not have many friends before we met. We were both socially a bit lazy, finding each other’s company enough most of the time. So all the people I know in the UK are friends I made whilst we were together. Only a couple of people knew Jane before they knew me.

I have little or no real contact with Jane’s family. I have met her mother twice since the funeral and her sister has vanished to Oxford. We were never really close. So I basically very very rarely have any contact with people from Jane’s past. People who “represent” Jane. People who knew and loved Jane before I did. People with stories I don’t know. People who were part of her life before I was. People who can “represent” her.

My friends will ask me how I am. And I tell them. Sometimes I even cry when I tell them. But there is very little Jane in my life because most people around me have been in my life at most 6 years and I have no connection with Jane and her past through them.

Apart from a couple of Jane’s friends from school.

They are the closest thing to Jane I still have. Even if they were not my closest friends (one of them I only really met last year), they were important to Jane and so they are important to me. They are my link to a part of Jane that is forever lost to me. They have memories that I will now only be able to get from them because Jane can’t tell me anymore. Oh, and the fact that I actually really like them…

And one of them invited me over for Christmas. In the USA where she now lives. And I am going.

Not so I can spend the entire Christmas talking about Jane. But for some reason the unspoken connection really matters to me.

But all this had to sort itself out in my head before I could tell my family I was going to spend Christmas not with the people who love me most but with a friend I have only recently come to know. Otherwise it would sound like I was simply saying: I just don’t want to spend Christmas with you.

So there it is. My first Christmas without Jane. It will be horrible. Excruciating. With hopefully some enjoyable bits. But surviving it is the best I can aim for right now.

24th Oct2011

Do you care? I do.

by Dutchcloggie

More than a week since the last post. Thanks to those who asked how I was doing. Nice to know some people are holding their breath waiting for news from me. My advice would be not to hold your breath. It might kill you ๐Ÿ™‚

I guess the reason for the lack of posts is because life is a bit boring and tedious at the moment. I cry every day, am going to college and started training for my new job today. I am going to work as a home carer and I look forward to starting. It is a bit of an adjustment, not having worked for more than a year.

Last week in the local paper, just after having been offered the job as a regular home carer, I noticed that the same team that cared for Jane in her last 8 weeks are looking for new carers to join ther End of Life services. I would really like to join the team because I know what an incredible difference it made to me and Jane, having such great support. But it has only been 4 months & 3 weeks since Jane died. Is that too soon to work in palliative care? I think I will only know for sure once I am on the job.

But that is not good enough. Because I think that if it turns out that I am not ready and I break down, remembering all we went through, it might be a major setback in my grieving process. End of life care is special. It is extremely rewarding but also emotionally draining. You are not just dealing with the patient but also with their, often very anxious, family. I can do the actual work and caring. I think I can provide the caring without gettng upset. Because the person I care for is not Jane. But I fear I might struggle to deal with the upset family members. I worry that it might remind me too much of my own fears and feelings. I fear that if I cry, it won’t be out of compassion for them, but my own grieving coming back to me. I am not explaining it very well but to me, there is a very big difference.

So after careful consideration, I have decided that this might simply be coming too early for me. If I can not feel sure about my ability to do the job right and to keep my emotions in check on the job, then I should not do it. Secondly, I don’t want to put myself through the emotional pain of applying, only to be told by the applications team that their experience tells them I should not be doing the job. Nothing worse than other people telling you what you really already know deep down but are trying to ignore. I will go and be a regular home carer first and see how that goes.

On a different note, I have been to a few open days for university and I most definitely want to go to Plymouth University. Great open day, nice people, good facilities and beautiful nature on the doorstep. Now I just need to finish my application and send it off.

Finally, I have decisions to make about what to do for Christmas. Needless to say, I would prefer to hibernate for the entire month of December, thus skipping what would have been Jane’s 28th birthday, Christmas and related festivities, and wake up on the other side on new year’s eve. I will write more about that in a few days.

22nd Oct2011

Jane’s last holiday

by Dutchcloggie

Two months before Jane’s death, we went to Stockholm. The trip was exhausting for her and often she was confused by the speed of things around her. But she loved it. And I loved seeing her enjoying it.

We were supposed to go to Paris for her last ever trip. I still have the Eurostar tickets. She never made it.

And just to remind you what Jane was like when she was fit and healthy, here is a video of Jane flying kites in Cornwall in 2007.

Please please please give generously to the Cynthia Spencer Hospice. They gave Jane the chance of a peaceful death and me the chance of being with her 24/7. The link is at the top of the blog.

13th Oct2011

A (Tena) pants shopping trip

by Dutchcloggie

Memories are like a Ninja: They hide in the dark and you don’t know they are there until they attack. And when they attack, it is fast and furious and there is no defence.

Last night after my biology class at college, I went to the supermarket. I was not feeling particularly sad as I walked around a little bit aimlessly, not sure what I needed. Shopping is always a bit depressing these days. I find supermarkets very overwhelming and confusing.

Many times in the past I would call Jane whilst shopping and ask her for help in calming me down and help me make sense of the enormous number of choices to be made when buying things. My ADHD means that making choices can be really stressful. She was always calm and understanding. Never seemed to think: Geez, you are 30+, surely you can do some shopping without trouble.

As I walked around, I came past the shelves with Tena Lady incontinence products. And then it happened. I froze on the spot. I stared at the various products on offer. The various types of pants in all kinds of sizes and pretty patterns. And I remembered all those times I had to buy them for Jane. How every shopping trip included large numbers of Pants.

Images of the times we had to struggle in small public toilets when her pants needed changing. Memories of how I could not leave the house without the Tena Bag: a bag with spare pants, babywipes and trousers. Reminders of our ski trip in Scotland when, after I had dressed Jane in all her ski gear with ski boots on and skis strapped to her feet, she spoke the words: I need a wee. Back to the toilets we went, all clothes off, sort it out and back out again. A delay of 20 minutes.

Reminders of when she trusted me. Reminders of when she let me help her. Reminders of how deeply we were connected.

Reminders of when she was still alive.

And I cried. I cried and cried. Right there, next to the Tena Lady pants. I did not want to give up and leave the shop because I did need food. So with silent tears streaming down my face, I wandered around the isles. As usual, people noticed but said nothing. Even when I asked a lovely lady where I could find the UHT milk, she smiled as if oblivious and pointed me in the right direction. Even the lady at the check out wished me a lovely rest of the evening, as I wiped the tears off my face…

All I wanted was for someone to ask: Are you ok? Grief in public is so incredibly lonely. I understand people are reluctant so I am not angry about it or anything. But the loneliness is insufferable. All you want is some kindness. Someone, ANYONE who notices you are crumbling. And when that doesn’t happen, things just get worse. I wanted to scream: somebody please please please speak to me. Somebody please ask me why I am crying so I can say the words out loud: the love of my life died and I am not coping very well tonight.

Instead, I bought some roses for Jane and got in the car. And I cried and cried. Alone.

Next time I see Tena Pants, the effect will not be so dramatic. Now I know I can either avoid them or be in control of the situation because I know what might happen. The problem is the I simply have no idea at all what will bring back a painful memory. Absolutely anything can and I don’t know until it happens. Because we used to have a normal life together, ANYTHING that happens in a normal life can bring back memories. So it is not a matter of simply avoiding things that might be upsetting. You don’t KNOW which things are upsetting. Something that did not upset me yesterday might suddenly be very upsetting today.

Something tells me that I will have to go through every single part of normal life and experience all the surprising moments of pain. And only after having been through all of them will normal life not be a constant reminder of Jane’s absence.

Finally, for the first time since Jane’s cremation, I bought flowers for her. In my new room, it seems Jane has found her own spot. In the flat, her ashes were just moved around all the time.

12th Oct2011

Getting rid of stuff

by Dutchcloggie

I have just driven to a town 15 miles away to give 2 boxes of my Jane’s clothes to the Cancer Research UK shop. I wanted it to go to the hospice shop as they cared for Jane so brilliantly but I just could not bear the idea of bumping in to someone in town wearing her clothes.

I still have one box which I am keeping but I am in tears now and had to stop on the way home to compose myself.

We used to joke about our clothes. We had the same clothes size for most of our relationship so when we moved in together our wardrobes simply doubled and we just wore each other’s stuff.

I have had to move from our lovely flat in to a tiny room in a shared house so I have been getting rid of so many things recently. Feels there is nothing left of our 8 years together but some pictures and my memories…

09th Oct2011

Astrocytoma: 6 years in 8 MRI scans

by Dutchcloggie

So here they are: Jane’s MRI scans that show how this all went down. They can no longer find the scans they did first, in 2005 so the first view of the tumour is from 2006, a year after surgery. It is difficult to compare scans exactly as they have been taken by different machines, at different times and with different contrast substances. So when something lights up really bright in the picture, that does not always mean the tumour got a lot worse.

January 2006
Diffuse Astrocytoma MRI January 2006

There is a clear grey area on the left of the front (the MRI is mirrored so the left of the picture is the right of the brain). It is clearly visible that the tumour is diffuse. There are no clearly defined edges. It is not crossing the midline of the brain.

January 2007
Diffuse Astrocytoma MRI January 2007

Although some areas light up more, it is clear the shape & size of the tumour has not changed much since the last scan. Indeed, Jane is still happily living a normal life, forgetting about the tumour, free from any symptoms.  The difference in contrast can sometimes be as simple as it being a different machine (or me not using the exact same slide).

January 2008
Diffuse Astrocytoma MRI January 2008
A year later and the tumour is still roughly the same size. At this point. the doctors were discussing a possible tiny tiny change. However, the change was so small that some said there was no change at all. It is difficult to judge from the scan how big the actual tumour is and what is swollen healthy brain tissue.
October 2008
Diffuse Astrocytoma MRI October 2008

Now things have changed. Jane had been complaining of headaches and double vision. The tumour is clearly larger than previously. It is also obvious there is a lot more swelling and the tumour is pushing against the midline, bending it out of shape. This is called mass-effect. The tumour has invaded the Corpus Callosum and this means it is now inoperable. The swelling of healthy tissue is once again difficult to separate from tumour tissue. Based on this scan, Jane has radiotherapy.

July 2009
Anaplastic Astrocytoma MRI July 2009

After the radiotherapy, the tumour has shrunk a little in size. Unfortunately, as is very clear from the 3 bright spots, the radiotherapy has caused extensive brain necrosis (death of healthy brain tissue) and the bright spots are cysts filled with fluid, where brain used to be. Further more, the centre of the image shows the tumour has crossed the midline and has taken on the appearance of a much more aggressive tumour. It is now no longer a benign tumour but an Anaplastic Astrocytoma Grade III. In short: radiotherapy has not worked and caused brain damage. No cure is possible after this. Chemotherapy is started.

January 2010
Anaplastic Astrocytoma MRI January 2010

After 6 months of chemotherapy, the tumour has shrunk somewhat. It no longer presses on the midline of the brain. There is considerably less mass-effect. The grey area is smaller, although the cysts remain. They will not go away. This is a positive result compared to the previous scan and there is hope that the chemotherapy will continue to contain the tumour.

June 2010
Anaplastic Astrocytoma MRI June 2010

Very little change in the scan. Some slight change in the grey area but I can not tell if this is just because it is a different scan or if this means something. Although Jane’s symptoms are getting worse, the scan offers no proof of further progression. Just like there can be a tumour with no symptoms for a long time, it is possible to have symptoms longs before the scan shows any change.

September 2010
Anaplastic Astrocytoma September 2010

2 months later, the story is completely different. The chemotherapy is no longer working. The scan is not as clear as the previous ones but it is obvious that the tumour now stretches much further in to the brain. It has now reached the brain stem and affects both sides of the brain. There is no sure fire way to distinguish between diffuse tumour tissue and brain swelling but it is clear a larger area of the brain is now affected. Jane is admitted to the hospice and large doses of steroids help reduce the swelling. Symptoms improve for a few months.

A final scan is done in January 2011. I don’t have that scan (yet) but that scan shows more necrosis and new tumours in different parts of the brain.

So that is what it looks like. A relentless march towards death. It never really got much better, no matter what we tried. Looking at these scans makes me angry, it makes me sad. But it also gives me a strange sense of acceptance. It shows in very clear images that nobody could have done anything.

06th Oct2011

Our trip to Stockholm

by Dutchcloggie

BunnyFactor10 ยท Post
Our trip to Stockholm
Posting as BunnyFactor10

Finally I made the time to put a video together of our trip to Stockholm in March this year.

Happy memories.


05th Oct2011

Today – Rebecca Blackman

by Dutchcloggie

I few years back, I heard a song about someone who loses a loved one. I liked it then. After Jane’s passing, I remembered the song and tried to find it again. I only remembered one line of the lyrics but I emailed a DJ of a podcast where I *thought* heard it first. The man came back to me within minutes to give me all the details I needed. He said he would never forget that song. And neither will I now.

Here it is. It is pretty emotional. I was in tears when hearing it again. It is called “Today” by Rebecca Blackman.

Turn the light out
Leave the door
Like you’re a small child again
This could be the last time
I say
See you in the morning
And you hear me walk downstairs

The TV’s on
But I’m not listening
To the blurred stream of words
The newsreader’s talking but
She doesn’t know
What happened today

She hasn’t been at the hospital
Waiting around
For results you don’t want to hear
She didn’t wake up forgetting
Them remember it wasn’t a dream

Everyone’s smiling
The sun’s out
The weather’s hot
I’m just trying to keep it together
So what about sandals and BBQ’s
I really don’t care

The TV’s on but I’m not listening
To the blurred stream of words
The newsreader’s reading news
But she don’t know
What happened today

She hasn’t been cancelling holidays
For three
Maybe two
She hasn’t swallowed a lump in her throat
She didn’t wake up forgetting
Then remember it all again

Settle down
I’ll tuck you in
That’s all I can do for now
I’ll turn the light out
Leave the door

Be there a potion to drink
I’d make it for you
A dance that would heal
I’d dance
I can’t help my jealousy
I don’t like it
But it’s there
They don’t know what’s been happening today

They haven’t been at your bedside
Stroking your face
They haven’t been there with you
Squeezing their hand
They didn’t wake up forgetting
And for a second feel fine

They don’t know what really happened today

You can listen to the song here: Rebecca Blackman

05th Oct2011

Moved

by Dutchcloggie

After Saturday’s rather emotional outpouring of confusion, time for an update about my move.

On Sunday, I moved in to my new room. After living in a house and flat with Jane, moving back into a single room is a huge adjustment. My friends K & R came over on Sunday to help. As it turned out they were needed mostly for emotional support and to keep me from losing my mind. I was running around, achieving nothing until K said: Right. What am I actually supposed to be DOING here?

I took them to my new room and asked them to have a think of what furniture they thought I should take. They both decided the studybed would fit just fine, that it was just me having a complete panic. I ordered the bed yesterday. The last time I spent that amount of money was when I booked a trip for 2 to Stockholm in Februari! Geez.

In the end, the room looks ok. If I were a student, I would be pretty chuffed with a room like mine. But I am not a student. I am 36. And all I have to show for 8 years with Jane is a rise/recline chair and a handful of photographs. That’s what is so hard. I look around my new room and think: This is what I have left? Yes I have stored some things at friends: camping gear, snowboard stuff, our double bed. But most things are more expensive to store than they would be to buy new. So logically, it makes sense to just sell them and replace them later. I am now a proper EBayer ๐Ÿ™‚

My landlady, who is quite nice, also lives in the house. She is doing the refurbishments all by herself. And since she is as chaotic as I am, she is working on everything at the same time. Since I would really like her to finish the second bathroom first, I volunteered to paint the kitchen, just so that it would not distract her.

I enjoyed painting the first part yesterday. Today I am paintinting the ceiling.

It keeps me busy and gives me a feeling of actually accomplishing something.

Yes the room is small. Yes it is a step back. But at least I have people to talk to on a regular basis. I am not worried about being able to pay the rent.

There are good things about this.

Just wish I could show Jane how things are going.

01st Oct2011

Moving house

by Dutchcloggie

Tomorrow I am moving from our lovely big flat in to a tiny double room. Like stepping back in time almost 15 years.

Let’s just say I am not coping as well as I thought I was. As I sit here on the floor of the flat amidst piles of flatpack furniture, clothes, memories and all kinds of other things I will have to leave behind, all I can do is cry.

I went to see my new room today and measured it. And it turns out that the fabulous new StudyBed I was going to purchase is most likely simply too big for the room. So I can not have it. A bed that turns from bed in to desk in a second seemed a brilliant idea. It meant I would not feel like being holed up in a tiny tiny bedroom all day. In a second, I would hide the bed and have a living room instead. But now it does not fit. And that small fact has broken the camel’s back. I can not do this.

How did it come to this. Why did I not find a way so that I had enough money to stay here? Why didI not go back to work sooner so I maybe would not have had to move? Why did I jot get off my lazy arse and go back to work like so many other widows? Why does the fucking probate take so long? If that had been quicker, I would not have to move.

Ironically I may well have a job by the end of next week. And apparently probate is going ‘well’ and they may be able to release the cash part of my inheritance soon.

All too late.

It is all going wrong. I knew something was not right. It was all going too well. It was all so much easier than I thought it would be. I was waiting for something to happen. It could not be this easy to get on with life after losing the thing you love more than life itself.

It isn’t. It isn’t just difficult, it is virtually impossible.

Somebody please make this all go away. I don’t want this anymore.